Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Monday, September 2, 2013

They said she wouldn't walk. It's been 1 year.

I had this post planned for a long time, but the title has changed at least 5 times. We are coming up on a lot of anniversaries for Hailey. August 6th was 2 years since our first "true" signs of Leukodystrophy and Hailey's first admittance into the hospital with a misdiagnosis. July was 1 year that we were given her diagnosis, October will be 1 year of have her g-tube placed. Then lastly with tears of happiness I can change this sentence:

September would have been 1 year that Hailey has not walked on her own.

To this sentence:

It took Hailey 1 year to be able to regain her ability to take steps on her own!!!

She did it!! We watched her take steps with our jaws on the floor! She has taken as many as 6 steps on her own! We were told that it had been so long since she had been able to walk, and since the white matter that surrounds her central nervous system was basically gone, the chances of her being able to walk again was extremely low. I have to admit that I had my doubts that Hailey would ever take independent steps on her own. I accepted that she would be confined to a wheelchair. When I think back to all the other times she had an episode and lost her ability to do things she always fought and came back. I feel horrible for not thinking or believing that she would fight again. She has more will then any person I know. Leukodystrophy is a heartbreaking and horrible disease that can appear to be more powerful then a human being is capable of handling. It comes in so many forms and has so many unknowns. When someone tells me that they can't imagine having their child go through this I think back to that movie Lorenzo's Oil. (If you choose to watch this movie have boxes of tissue handy) That child had ALD which is a form of Leukodystrophy and Dr.s and family and friends told that child's parents to just let him go in peace. The parents fought and kept fighting even when they had no help & no where to turn. As a family they didn't give up.

Josh and I will never give up on Hailey and I know I will NEVER doubt her strength again.

Hailey wants to walk everywhere we go. She likes to hold my hand and take her steps. Most times it's not feasible, like when we go to a mall, for her to walk the whole time. When we go to therapy we park close to the door and I will ask her if she needs her chair. She will always say, "no, I walk." So I help her walk. When we see our NUCCA it's the same thing, "I walk." Now that she is at school her teacher and her aide allow her to bare weight on her legs and hold hands and walk throughout the classroom. We went to Utah last week to see the Rehab doctor and based on Hailey's last exam they planned on giving Hailey botox injections. When we got there and showed the Dr. that Hailey was taking independent steps she asked if she could record it to show the neurologist in Salt Lake. She had never seen Hailey vertical before besides when Hailey was in the stander. Even though there were still some issues with Hailey hyperextending her right leg and having her left foot turned out she did NOT end up getting the injections.

Now I don't want to be one of those parents who take this disease for granted. I know what it is capable of. I read about it everyday. If there comes a time when another episode hits and she can't take these steps again I won't feel like a depressed sad puddle on the floor, like I usually do. I will help Hailey work to get back to where she was. If Hailey chooses that she's not able to get there again, I will accept that. I will also be happy for these moments that happen where she can be out of her wheelchair and hold my hand to take steps.